Talk Books: What Dying People Want

I’ve mentioned before that sometimes I use my blog as a way to store stuff that I want to remember or have easy access to later. I also use it as a means of collecting information all in one place, so that it is easy for me to search and reference again in the future, rather than having to flip through stacks of books. This leads me to a tendency to leave huge stacks of books piled by computer waiting for me to have time to transcribe all of the important stuff out of them. Often, I get fed up and re-shelve them, thinking why bother re-typing someone else’s ideas anyway, shouldn’t I just be having my own ideas?! Or, I think, guess what Molly, there is a way for this information to be stored…it is called a book and the information will still be there if you want to go back to it. But, today I thought that maybe there is a happy medium—maybe as soon as I finish a book, I should do a quick wrap-it-up blog post in which I do simply transcribe the things I want to remember, no pressure to add a bunch of new insights of my own, and if at such time I want to transform any of those quotes into a longer post in the future they’ll be tidily saved and waiting for me. AND, the book can then be re-shelved, or even given away, promptly after being “processed” in this manner, rather than waiting by my computer with a sort of guilt-provoking air of expectancy and rebuke.

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Unfortunately, the subject of my most recent read isn’t really a cheerful one to kick off this little experiment! However, I’m doing it anyway. The book is What Dying People Want by David Kuhl, MD. Many people have observed that end-of-life care bears similarities to birth-care (beginning-of-life care) and in fact the content of most the sections I marked to share could very readily have the word “birth” or “pregnant woman” substituted. Of course, with end-of-life care, there is not the happy anticipation of the joyful hope and promise of a new baby, but then, with birth-care there is not actually always a guarantee of that either and many women experience grief and loss from a variety of sources/experiences mingled throughout their childbearing years.

With regard to doctors communicating with patients in a dismissive, brusque, or too no-nonsense of a manner:

“…he had no intention of hurting her and seemed not to realize that he could have spared her much suffering if only he had spoken with compassion.”

Seriously. How true is this. How basic. And, how often overlooked.

And then, when talking about the doctor-patient relationship:

It is my sense that people visit physicians expecting to be heard, taken seriously, and understood. Martin Buber speaking of the essence of relationship in his book I and Thou. He states that an I-Thou relationships is one in which both people meet and experience one another in the context of their wholeness, their personhood. Only then do the two become equals with regard to dignity, integrity, and power…

…When the doctor regards the patient only as a disease [or baby container]…the relationship is at risk of becoming the I-It variety. That is also true if the patient regards the doctor only as a body of knowledge, disregarding the impact the doctor-patient relationship might have on the doctor. Hence, the relationship may be reduced from I-Thou, to I-It, or perhaps even to It-It. The relationship is at risk of becoming ‘a disease speaking to a body of knowledge, a body of knowledge speaking to a disease…

I use this in my classes too, explaining that relationship is our medium and without it we can be technically correct, but therapeutically impotent. I caution against falling into a pattern of speaking of peopleas “cases” or even worse, “the food stamp case” or “the brain tumor in room three” (real-life example from my first MSW internship in an oncology clinic).

I also marked this Emily Dickinson poem, The Mystery of Pain:

Pain—has an Element of Blank—

It cannot recollect

When it began—or if there were

A time when it was not—

It has no Future—but itself—

Its Infinite realms contain

Its Past—enlightened to perceive

New Periods—of Pain.

Dr. Kuhl also writes about the important of touch, something that birthworkers also know well, explaining:

As Bill Moyers writes, “Touch is deeply reassuring and nurturing. It’s the first way a mother and child connect with each other…what a mother is saying to her child with that touch is ‘Live…your life matters to me.'” Remen also describes how people with cancer [or who are having babies] often feel when they’re touched by health care providers. They say they feel as though they are merely ‘a piece of meat.’ She reports that one woman said, ‘Sometimes when I go for my chemotherapy, they touch me as if they don’t know anybody’s inside the body.’

The first part of this made me think about what my mom is doing for my grandma right now, only in the reverse order. Once upon a time, her mother connected to her with that touch…Live…your life matters to me…and now my mom returns this original patient, loving, nurturing touch, only it is saying, I’m here…your life has mattered to me…go with peace.

I’d marked a couple of other things about family relationships and sharing stories, etc., but the last quote I actually want to type out does actually touch on birth:

There are two important things to remember with regard to your childhood and your family of origin. First, each pregnancy changes the family in that it will either result in a miscarriage, which is a death, or a birth, which marks the addition of a new family member…Second, your memory is your story and your truth. Your family members will have experienced the same events differently and will likely have different memories. Your experience and understanding of events is legitimate; the same holds true for other family members.

I wrote my grandma a letter and mailed it at the beginning of this week, but I don’t know that it is going to make it to her in time. So, a couple of days ago, I took this picture of the kids and texted it to my mom to give to her:

You can do hard things, I’ve told my mom. And, she is. Really hard, sad things. You feel like you can’t do it, butyou’re doing it.

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5 thoughts on “Talk Books: What Dying People Want”

I have found this process of noting what I want to remember so much easier since I switched to ebooks. I use Moon+ Reader for Android, highlight/note things in there, then email myself all those highlights and notes when I’m done reading. I’ve been converting PDFs for academic journals to EPUB so I can read them in there, makes citing the proper source SO much less time consuming than my prior system digging through papers covered in postit notes and highlighter marks (which also mess with my dyslexia)!

Yes, I LOVE it when I have a kindle or ebook version and can copy and paste my memory-records, rather than retyping. The mini librarian in me though really, really likes having hard copies to lend out though–it is a toss up!🙂

Thanks for this wonderful post. I will definitely look up the book! As a mother who is at the point when my child is leaving the nest and also as someone who has worked with older people for 30 years, I’ve been thinking a lot lately about birthing, mothering, letting go, and being with those who are dying — your post has gotten me thinking about how those all relate. Thank you!

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I sometimes receive books to review or products to give away. These items are provided to me at no cost in hopes that I will share information about them. Opinions given in my reviews are honest and my own. I have no further financial relationship with any of the authors or companies for whom I review products.